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Registries: Big data, bigger problems?

  • Author Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Luc Rubinger
    Correspondence
    Corresponding author at: Center for Evidence-Based Orthopaedics, Division of Orthopaedics, Department of Surgery, McMaster University, 293 Wellington Street North, Suite 110 Hamilton, ON L8L 8E7, Canada.
    Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Affiliations
    Division of Orthopaedics, Department of Surgery, McMaster University, Hamilton, ON Canada
    Search for articles by this author
  • Author Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Seper Ekhtiari
    Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Affiliations
    Division of Orthopaedics, Department of Surgery, McMaster University, Hamilton, ON Canada

    Centre for Evidence-Based Orthopaedics, 293 Wellington St. N, Suite 110, Hamilton, ON L8L 8E7 Canada
    Search for articles by this author
  • Author Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Aaron Gazendam
    Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Affiliations
    Division of Orthopaedics, Department of Surgery, McMaster University, Hamilton, ON Canada

    Centre for Evidence-Based Orthopaedics, 293 Wellington St. N, Suite 110, Hamilton, ON L8L 8E7 Canada
    Search for articles by this author
  • Author Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Mohit Bhandari
    Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
    Affiliations
    Division of Orthopaedics, Department of Surgery, McMaster University, Hamilton, ON Canada

    Centre for Evidence-Based Orthopaedics, 293 Wellington St. N, Suite 110, Hamilton, ON L8L 8E7 Canada
    Search for articles by this author
  • Author Footnotes
    1 All authors have made substantial contributions to all of the following: (1) the conception and design of the paper, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. The manuscript, including related data, figures and tables has not been previously published and is not under consideration elsewhere.
Published:December 12, 2021DOI:https://doi.org/10.1016/j.injury.2021.12.016

      Highlights

      • Patient registries are data systems organized to allows the prospective collection of clinical data to assess specific outcomes.
      • Types of registries include administrative, linked, and disease-, procedure- or pathology-, or product-specific registries.
      • Registry studies are typically considered level II or III evidence, however the advent of registry based RCTs may change this paradigm.
      • Strengths of registries include the volume of data available, diversity of included participants, and efficient enrollment and data collection.
      • Limitations of registries include variable quality of data, lack of active follow-up, and, often, a lack of detail in the data collected.

      Abstract

      Patient registries have grown in size and number along with general computing power and digitization of the healthcare world. In contrast to databases, registries are typically patient data systematically created and collected for the express purpose of answering health-related questions. Registries can be disease-, procedure-, pathology-, or product-based in nature. Registry-based studies typically fit into Level II or III in the hierarchy of evidence-based medicine. However, a recent advent in the use of registry data has been the development and execution of registry-based trials, such as the TASTE trial, which may elevate registry-based studies into the realm of Level I evidence. Some strengths of registries include the sheer volume of data, the inclusion of a diverse set of participants, and their ability to be linked to other registries and databases. Limitations of registries include variable quality of the collected data, and a lack of active follow-up (which may underestimate rates of adverse events). As with any study type, the intended design does not automatically lead to a study of a certain quality. While no specific tool exists for assessing the quality of a registry-based study, some important considerations include ensuring the registry is appropriate for the question being asked, whether the patient population is representative, the presence of an appropriate comparison group, and the validity and generalizability of the registry in question. The future of clinical registries remains to be seen, but the incorporation of big data and machine learning algorithms will certainly play an important role.

      Keywords

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